Monday, February 13, 2017

Resistance

It is the second week of February and this will be my third
official post of the month. I would like to say it is because I do not
have much to write about, but it is more that I have no energy to put onto
"paper" what is circulating in my mind. It is partly because I
am sure I could go to the search bar on this blog, type in a few words and
voila, my exact thoughts, feelings, and words will be staring back at me.
I am beginning to realize that is just going to be how life works when
dealing with CDKL5. The seizures come, you throw out your best weapons,
sometimes you win, more often you lose, but no matter what, you end up back
where you started...in your arsenal staring at the walls and debating.

For 14 days, we
have been trying to gain back some semblance of control, for 14 days she has
had 1-3 seizures a day, for each of the 14 days she has spent an average of
4-12 minutes not in control of her body, for 14 days we have yet again failed
her. Feeling like a failure in this department is absolutely crushing.
There is nothing I can do personally to stop these things from coming.
There is no way to explain to her that we are trying our best and that
our bestwill not ever
be good enough. It will not ever be good enough tojusttryto
find a solution, and there isno solution
for refractory epilepsy. That is why refractory epilepsy is also known as
uncontrolled, intractable, anddrug-resistant
epilepsy.

There is no
positive spin to put on seizures, no silver lining or ray of sunshine.
There is honestly nothing good that comes out of watching your child
suffer and being unable to put a stop to it. It has been two years since
I knew things were not right, and while I am numb to the experience of watching
her seize, and to the seizures themselves, I am not anymore okay with the
feeling of daily defeat that goes with all of this. I know I will not
ever be, I do not think any parent could be. I guess it is only fair that
she is not the only one resistant to something.